Annotation: This resource provides a brief introduction to results-based accountability as a way to effectively measure Evidence-based or informed Strategy Measures (ESMs) as part of the 2017/2019 MCH Block Grant submission. It has been designed to start a process of quality improvement in advancing ESMs, both across the nation and in each Title V agency. It also describes sources for technical assistance. Similar reports are available for each individual state and territorial jurisdiction of the U.S.

New York State Department of Health. 2003. Resource directory for children with special health care needs [rev. ed.]. Albany, NY: New York State Department of Health, 27 pp.

Annotation: This booklet outlines New York state programs and services providing medical assistance to families with children living at home who have severe disabilities or medical conditions. Topics include state health care financing programs, descriptions and goals, eligibility, and contact information; early intervention programs; family support services; genetic services programs; Medicaid, special education services; and supplemental security income. Booklets are available in English, Spanish, Chinese, Russian, and French. [Funded in part by the Maternal and Child Health Bureau]

Annotation: This report provides background information about children with special health care needs (CSHN) and describes states' options for addressing those needs under the State Children's Health Insurance Program (CHIP). To assist state legislators who want to use the flexibility of Title XXI to improve services for CSHN, the report describes the following strategies: providing supplemental benefits; arranging for specialists to be included under the CHIP plan; expanding eligibility criteria to assist additional families; defining "medical necessity" more broadly; modifying cost-sharing requirements; and addressing quality assurance issues. Appendices include details about programs in Connecticut, Florida, and North Carolina; public health care programs for low income children; and lists of state and national contacts. [Funded by the Maternal and Child Health Bureau]

Annotation: This resource manual for state Title V Children with Special Health Needs (CSHCN) Programs contains materials that support the efforts of program leadership to carry out their legislated responsibilities. These materials include four annotated bibliographies of key documents and resources; a brief legislative history of Title V of the Society Security Act and Maternal and Child Health Services Block Grant Program; a discussion of the MCH Block Grant Performance Measures within the context of both the national agenda for CSHCN and the core CSHCN Program functions; an overview of the Division's current programmatic, product development, and technical assistance activities; and selected resource materials from other related initiatives. The annotated bibliographies are organized under four topical areas: rehabilitation services for Social Security beneficiaries, providing services to CSHCN, development of community systems of services, and family centered care. These bibliographies include citations to policy briefs, briefing books, federal agency documents, project reports, training materials, legislation, journal articles, and books. Each listing provides information about the document, including a brief summary and where to obtain it. [Funded by the Maternal and Child Health Bureau]

Annotation: This report provides baseline information on state maternal and child health (MCH) and children with special health care needs (CSHN) units and their leadership. Additionally, it provides a starting point for the development of measures to enhance training opportunities and technical assistance for directors who may perceive a need for training and skills upgrading for themselves and their staff. The report is presented addresses the location, responsibilities, and reorganization status of Title V units beginning with a description of the historical context and approach followed by profiles of maternal and child health units, maternal and child health leadership, profiles of children with special health care needs units, children with special health care needs leadership, a discussion of the operational environment, and recommendations. [Funded by the Maternal and Child Health Bureau]

Annotation: This resource brief describes the childhood component of the National Health Interview (NHIS) Disability Supplement and current plans for release of data files, identifies ways in which state Title V programs can apply the data to their own purposes of needs assessment and program planning, and suggests other related resources that state CSHCN program personnel might find useful. [Funded in part by the Maternal and Child Health Bureau]

Annotation: This summary paper provides information on experiences of state MCH and CSHN Programs using the document Public MCH Program Functions Framework: Essential Public Health Services To Promote Maternal and Child Health in America. Descriptions of experiences in addressing reorganization issues and developing strategic plans, orienting new MCH staff at the state and local levels, framing and developing contractor standards, preparing budget and staffing justifications, and training future public health professionals and educating constituents are summarized. The paper ends with names and phone numbers of contacts to provide further information on the state programs summarized. [Funded by the Maternal and Child Health Bureau]

Annotation: This report describes the technical assistance provided to Connecticut in developing a monitoring and oversight system for providing care to children with special health care needs. The report includes background information and information about data collection tools and quality monitoring indicators. [Funded by the Maternal and Child Health Bureau]

Annotation: This document gives the results of a nationwide survey of state agencies for children with special health needs that focused on care coordination. It gives information on care coordination definitions, quality guidelines, personnel preparation and training standards, and strategies for evaluating outcomes. It also includes a list of products developed by the states, such as assessment tools, service plans, policies and procedures, performance standards, and other documents. [Funded by the Maternal and Child Health Bureau]

Annotation: The purpose of this report is to examine the likely impact of Medicaid programs on children with special health care needs by looking at four states that have had waiver applications approved and are currently implementing demonstration programs—Hawaii, Oregon, Rhode Island, and Tennessee. It also considers the likely impact of waiver programs on the major publicly funded programs with responsibility for special needs children—state programs for children with special health care needs (CSHN). Following an introduction on the concept of waivers and demonstration programs, the report is divided into three other chapters. Chapter 2 describes demonstrations of waiver programs in the four states and assesses the impact of the programs on children with special health care needs. Chapter 3 contains an analysis of the ways in which the four programs have affected, or are likely to affect, the CSHN programs in those states. Chapter 4 provides a summary of the findings and offers suggestions regarding the issues that states might want to consider in planning future waiver programs and the new roles and responsibilities that CSHN programs adopt in waiver program states. [Funded by the Maternal and Child Health Bureau]

Annotation: This report presents the survey findings on the kinds and amounts of participation by parents and other family members in state Title V Children with Special Health Care Needs programs around the country. Types of participation described include committees, in-service training, toll-free numbers, hiring family members, support groups, input from underserved populations and adults with disabilities, and participation in the block grant process. A directory of state Title V directors is included. The survey was funded by the Maternal and Child Health Bureau, U.S. Department of Health and Human Services.

National Center for Case Management and Automation. 1992. Survey of the systems of care and automation in the state and territorial agencies that serve children with special health care needs. Los Angeles, CA: National Center for Case Management and Automation, ca. 200 pp.

Annotation: This report provides results from a survey on the automation systems being used to manage information in state programs for children with special health care needs, including hardware, software, automated administrative functions, reports generated, Title V capacity, and highlights of each program.

Annotation: This manual lists the goals for the Children's Medical Services (CMS) of the Florida Department of Health and Rehabilitative Services. These goals are directed at the continued development of a comprehensive health care system for children with special health care needs and their families in Florida. Strategies and outcomes are listed for each of the CMS program goals. This CMS program charts a course for the effective delivery of services to children with special health care needs and their families through delivering the guiding principles and implementation of the strategies that are designed to create a family-centered, comprehensive health care program for children and their families.

Annotation: This report discusses the 1989 Title V maternal and child health services block grant mandate that state children with special health care needs programs should assume a leadership role in developing community-based systems of services for these children and their families. It discusses the leadership role, elements of service delivery systems, steps in developing a service delivery system, and assistance in systems development that the federal Maternal and Child Health Bureau can provide to states.

Annotation: This report is a synthesis of a conference of representatives of states developing comprehensive service systems for disabled and at-risk children in the first three years of life. The conference was held to discuss legislative mandates for serving such children, systems for identifying such infants, and program evaluation. Topics covered in the report include choosing policy options, a discussion about policy planning, and avoiding pitfalls. Appendices accompanying this report include the conference's participants and a table showing the status of each state in childhood special education across 12 characteristics. [Funded by the Maternal and Child Health Bureau]

Annotation: This report reviews a revised set of data on both maternal and child health and crippled children's services. Part one of the report describes the health services for women of childbearing age and children provided, arranged, and purchased by Maternal and Child Health Units (MCHUs). Services provided, arranged, and purchased for handicapped children through State Crippled Children's Agencies (SCCAs) are reviewed in part two. Appendix A describes the Association of State and Territorial Health Officials Foundation forms revision process and provides background on the data collection methodology. The extent to which MCHUs and SCCAs reported complete data on services provided through local health departments and other service providers is discussed in Appendix B. Appendix C contains supplemental tables from secondary data sources. [Funded by the Maternal and Child Health Bureau]

Annotation: This document reports results of a survey of several states on the state of interagency coordination, including interagency agreements and policy coordination, direct services agreements, provider recruitment, standards of care, efforts at collaboration and coordination, and related issues. The survey instrument was developed at the request of the Division of Maternal and Child Health, U.S. Department of Health and Human Services.

Annotation: This report reviews a revised set of data on both maternal and child health and crippled children's services. Part one of the report describes the health services for women of childbearing age and children provided, arranged, and purchased by Maternal and Child Health Units (MCHUs). Services provided, arranged, and purchased for handicapped children through State Crippled Children's Agencies (SCCAs) are reviewed in part two. Appendix A describes the Association of State and Territorial Health Officials Foundation forms revision process and provides background on the data collection methodology. The extent to which MCHUs and SCCAs reported complete data on services provided through local health departments and other service providers is discussed in Appendix B. Appendix C contains supplemental tables from secondary data sources. [Funded by the Maternal and Child Health Bureau]

Fleming JW, ed. 1980. Second national conference on nursing in crippled children's services (CCS)/supplemental security income for disabled children programs (SSIDC). Lexington, KY: University of Kentucky, College of Nursing, 117 pp.

Annotation: This the report of a conference on the challenges related to caring for children with special health needs. It presents issues related to the nursing care of children with disabilities. The role of the CCS-SSIDC and its programs and implementation guidelines are highlighted. It also discusses current trends and future priorities for the care of children with special health needs. Group recommendations and appendices are provided.

Maternal and Child Health Library

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.